Skip to main content

Helpline

0300 111 1234

News

What's happening in PKD research?

07 September 2026 | Amanda Burke | Latest news
Research into polycystic kidney disease (PKD) is moving faster than ever. Scientists, doctors and other experts are working together to understand every stage of the disease. Some researchers are st…
Read more

Could gene therapy help children with ARPKD in the future?

01 September 2026 | Amanda Burke | Latest news
Summary Gene therapy is a new way to treat diseases caused by changes in our genes. It works by giving cells new instructions to make the faulty gene work better. Gene therapy for PKD is still at a…
Read more

Why does Polycystic Liver Disease affect people with PKD differently?

26 August 2026 | Amanda Burke | Latest news
Many people with ADPKD also develop polycystic liver disease (PLD). This is where cysts grow in the liver. We recently told you about £812,000 of new research funding through the PKD Partnership. Thi…
Read more

Remembering Maurice Slapak CBE | 1930-2026

12 August 2026 | Jane Pugh | Latest news
We are saddened to hear of the death of Dr Maurice Slapak CBE, the pioneering transplant surgeon, founder of the British Transplant Games and the first President of the World Transplant Games Federat…
Read more

PKD Partnership announces £812,000 in research and training awards

11 August 2026 | Amanda Burke | Latest news
Last summer we told you about an exciting milestone, the launch of the PKD Partnership, our collaboration with Kidney Research UK to speed up progress in PKD research. The partnership invited scienti…
Read more

Transforming community voices into national action 

07 August 2026 | Jane Pugh | Latest news
Progress, priorities and next steps. For several months, the kidney community has been campaigning to policy makers for a Kidney Disease Modern Service Framework¹.  Together, we’ve already made sign…
Read more

PKD Awareness Week: Together, We Can Build Understanding

24 July 2026 | Jane Pugh | Latest news
Join us from 4–11 September as we raise awareness of polycystic kidney disease (PKD) By sharing facts, stories and experiences of ADPKD and ARPKD, we can raise awareness, improve support, and help d…
Read more

New horizons for PKD research

17 July 2026 | Jane Pugh | Latest news
The recent New Horizons in Polycystic Kidney Disease (PKD) event brought together PKD researchers and clinical scientists from across the UK at Brunel University to share recent progress, explore new…
Read more

New Government framework highlights the vital link between heart and kidney health

08 July 2026 | Jane Pugh | Latest news
This week, the Government published the Cardiovascular disease (CVD) modern service framework (MSF): a cardiovascular-kidney-metabolic approach – a new national strategy aimed at reducing premature d…
Read more

The hidden impact of salt on kidney health and PKD

13 May 2026 | Jane Pugh | Latest news
How often do we hear that too much salt is bad for PKD, but why is it such a concern? For people living with polycystic kidney disease (PKD), reducing salt intake can play a key role in protecting k…
Read more

ANN UK Joins UK Kidney Association: A Stronger Future for Kidney Care

25 March 2026 | Jane Pugh | Latest news
The UK kidney community is set to benefit from a major development: the Association of Nephrology Nurses UK (ANN UK) has formally joined the UK Kidney Association (UKKA) as a recognised professional…
Read more

Rare but Not Alone: Understanding Rare and Inherited Kidney Diseases

24 February 2026 | Jane Pugh | Latest news
What is a Rare Disease?  Every year, Rare Disease Day raises awareness of the 300 million people worldwide living with a rare disease. It is currently estimated that there are over 7,000 rare diseas…
Read more

World Kidney Day at 20: Raising Awareness. Driving Change.

20 February 2026 | Jane Pugh | Latest news
On 12 March 2026, we mark 20 years of World Kidney Day, the global campaign highlighting the incredible role kidneys play in keeping us alive, and the huge impact when they don’t work properly.  Kid…
Read more

Kidney Disease Cannot Wait: Ask Your MP to Act Now

30 January 2026 | Jane Pugh | Latest news
Kidney disease affects more than 7 million people in the UK, including many living with polycystic kidney disease. It is one of the fastest growing health crises, projected to become the fifth leadin…
Read more

National Lottery Funding Boosts PKD Support in Scotland

29 January 2026 | Jane Pugh | Latest news
We are delighted to announce that PKD Charity has been awarded funding from The National Lottery Awards for All Scotland for our brand new PKD Scotland: Outreach and Community Connections Project.  …
Read more

Seven Million Lives at Risk: What's the Plan?

14 January 2026 | Jane Pugh | Latest news
Kidney disease affects millions of people in the UK and is one of the fastest-growing health challenges, yet it has been under-prioritised for far too long. Following the government’s 10-Year Health…
Read more

Tess Harris Fellowship Fund

18 December 2025 | Rachel hay | Latest news
Last year, PKD Charity, and the wider kidney care community, suffered the profound loss of Tess Harris. Tess joined PKD Charity in 2004 as a Trustee and quickly became a driving force for change…
Read more

Kidney Charities Unite to Urge PM to Act on Kidney Disease

23 October 2025 | Jane Pugh | Latest news
This week, the PKD Charity joined four leading kidney charities, patients and clinicians at 10 Downing Street to urge the Prime Minister to take urgent action on kidney disease. Without change, it co…
Read more

Damage to tiny kidney blood vessels is an early feature of PKD progression, UCL finds

25 September 2025 | Jane Pugh | Latest news
A new study from University College London (UCL), supported by the PKD Charity, has revealed that the kidney’s tiny blood vessels (the microvasculature) are damaged in the early stages of Autosomal D…
Read more

CKD Summit Scotland: Shaping the Future of Kidney Health

18 September 2025 | Susan Muirhead | Latest news
On 17 September 2025, PKD Charity was proud to take part in Scotland’s first-ever Chronic Kidney Disease (CKD) Summit in Edinburgh, hosted by Kidney Research UK. Our Support Services Manager, Susan M…
Read more

Study finds promising new treatment approach for PKD

01 September 2025 | Jane Pugh | Latest news
New research led by Professor Colin A Johnson and researchers at the University of Leeds and University of Sheffield, has identified a promising new way to treat polycystic kidney disease (PKD) by te…
Read more

PKD Awareness Week: Speak Out, Step Up, Make a Difference

28 August 2025 | Jane Pugh | Latest news
Join us in bringing much-needed attention to polycystic kidney disease (PKD), 1-7 September. This week shines a light on PKD, supports families, and pushes for better treatments and, one day, a cure…
Read more

What is RadaR? And Why Does It Matter for PKD?

22 August 2025 | Jane Pugh | Latest news
RaDaR—the National Registry of Rare Kidney Diseases—is a UK Kidney Association initiative launched in 2010 to collect detailed, long-term data from patients with rare kidney conditions, including aut…
Read more

Transforming the future of PKD: PKD Partnership launches research funding call

06 August 2025 | Jane Pugh | Latest news
A major milestone in our mission to change the future of polycystic kidney disease (PKD) has arrived. After years of conversations and planning, we have established the PKD Partnership — a bold coll…
Read more

Time for Action on Kidney Disease: Help Us Call for a National Strategy

07 July 2025 | Jane Pugh | Latest news
Last week, the government published the 10 Year Health Plan for England—yet kidney disease was largely overlooked. This is a missed opportunity to address one of the fastest-growing health threats in…
Read more

NHS 10-Year Health Plan - What It Could Mean for PKD Care

03 July 2025 | Jane Pugh | Latest news
Earlier today, the Government published its 10-Year Health Plan for England, called Fit for the Future. The plan promises to deliver three big changes in the way healthcare works: moving care from ho…
Read more

WHO says Yes: Kidney health is a global priority!

20 May 2025 | Jane Pugh | Latest news
PKD Charity alongside Kidney Care UK, Kidney Research UK, Kidney Wales, The National Kidney Federation, Popham Kidney Support, and the UK Kidney Association are delighted to report that on 23 May 202…
Read more

From Hidden Threat to Global Priority: The Case for Chronic Kidney Disease

16 May 2025 | Jane Pugh | Latest news
The World Health Assembly, the decision-making body of the World Health Organization (WHO), is debating whether to make kidney health a global priority at its next meeting in May 2025. If passed, th…
Read more

Salt Awareness Week: PKD Charity Joins Call for Government Action on Salt

09 May 2025 | Jane Pugh | Latest news
Let's Talk Salt! This Salt Awareness Week (12–18 May), we’re supporting Action on Salt’s 2025 campaign: 6 Ways to 6 Grams. The aim is simple – raise awareness about the dangers of too much salt and…
Read more

Help Shape the Future of Liver Transplant Allocation

15 April 2025 | Jane Pugh | Latest news
Your voice matters! As the only UK patient organisation dedicated to improving the lives of people affected by Polycystic Kidney Disease (PKD) we know how important it is for your voices to be heard…
Read more

Digital Health Intervention Enhances Wellbeing of People with PKD

08 April 2025 | Jane Pugh | Latest news
New results show Kidney BEAM physical activity digital health programme improves mental health and self-management in people living with polycystic kidney disease. Lead researcher, Juliet Briggs…
Read more

PKD Research Partnership Seeks Subgroup Leaders

27 February 2025 | Jane Pugh | Latest news
Lead a PKD Research Subgroup - Expressions of Interest Invited   The PKD Charity and Kidney Research UK are seeking leaders for 6 theme-specific research subgroups within the newly established UK…
Read more

Rare Disease Day: Understanding the Challenges

25 February 2025 | Jane Pugh | Latest news
What is a Rare Disease?  Every year Rare Disease Day raises awareness for the 300 million people worldwide living with a rare disease. In medicine, there’s a well-known saying: “When you hear hoofbe…
Read more

Remembering Tess Harris: A Legacy of Advocacy and Hope

24 February 2025 | Jane Pugh | Latest news
With a mixture of sorrow and fond memories, we honour Tess (Teresa) Harris, who served as CEO of the PKD Charity until she passed away on March 1, 2024. A year has passed, yet her impact on the Polyc…
Read more

US Woman Makes History as Longest-Living Recipient of Pig Kidney Transplant

14 February 2025 | Jane Pugh | Latest news
In a groundbreaking medical achievement, 53-year-old Towana Looney from Alabama has become the longest-living recipient of a gene-edited pig kidney transplant. As of February 2025, she continues to r…
Read more

First-Ever KDIGO Guidelines Set to Transform PKD Care

22 January 2025 | Jane Pugh | Latest news
We're pleased to announce the publication of the first-ever KDIGO (Kidney Disease: Improving Global Outcomes) Clinical Practice Guideline for Polycystic Kidney Disease (PKD), specifically addressing…
Read more

New Hope for PKD Patients: IMPEDE-PKD Research Study

17 October 2024 | Jane Pugh | Latest news
A ground-breaking research study is underway to investigate whether the diabetes drug metformin can slow the progression of Polycystic Kidney Disease (PKD), focusing on the most common inherited form…
Read more

Welcoming Alison Taylor as Our New CEO!

11 October 2024 | Jane Pugh | Latest news
We are delighted to announce that Alison Taylor has joined the PKD Charity as our new Chief Executive Officer. Alison brings over 22 years of leadership experience in health and research charities…
Read more

COVID-19 2024 Spring Booster - Who’s eligible?

23 April 2024 | Jane Pugh | Latest news
With protection from earlier COVID-19 vaccinations starting to wane, those who are more likely to become seriously ill from COVID-19 are being offered a free vaccine by the NHS from April 2024. C…
Read more

Pioneering Milestone: First Genetically Modified Pig Kidney Transplant Successfully Performed

23 March 2024 | Jane Pugh | Latest news
On March 16, 2024, the US witnessed a historic medical milestone: the successful completion of the first pig-to-human kidney transplant. This groundbreaking procedure, conducted at Massachusetts Gene…
Read more

Study identifies cell signals that might be intercepted to treat PLD

15 January 2024 | Hannah Bridges | Latest news
Following on from our recent article on polycystic liver disease (PLD), we’re excited to share some new research in this field. Researchers in Edinburgh, the Netherlands, Italy and Spain have discove…
Read more

The benefits and risks of a ketogenic diet for ADPKD from the KETO-ADPKD Study

15 January 2024 | Hannah Bridges | Latest news
Studies in animal models of autosomal dominant polycystic kidney disease (ADPKD) showed in 2019 that a ketogenic diet may have positive effects on cystic kidneys. Ketogenic diets are low in carbohydr…
Read more

AI Measures Kidney Size 6 Times Faster than Humans

15 January 2024 | Hannah Bridges | Latest news
Artificial intelligence (AI) once felt like it had a home only in science fiction stories, but there’s no doubt it’s now becoming an integral part of our world. The potential threats and opportunitie…
Read more

The PKD Research Consortium: Advancing the Fight Against Polycystic Kidney Disease

28 June 2023 | Jane Pugh | Latest news
Polycystic kidney disease (PKD) is the world’s most common inherited kidney disease, with substantial unmet needs and limited treatment options. In collaboration with Kidney Research UK, we've embark…
Read more

Help at your fingertips - The PKD App

11 January 2023 | Jane Pugh | Latest news
Developed by the PKD Charity, clinical specialists, patients and carers for the newly diagnosed and those at the early stages of ADPKD, the PKD App is the first of its kind.  Made possible by the…
Read more

Lab grown kidneys could lead to new treatments that slow disease progression

04 July 2022 | Jane Pugh | Latest news
We are delighted to fund Professor Colin A Johnson and his work looking for novel treatments for autosomal dominant polycystic kidney disease (ADPKD). Professor Colin A Johnson  The Problem…
Read more

New study aims to prevent cyst formation in ADPKD

28 June 2022 | Jane Pugh | Latest news
We're pleased to announce that we are funding Professor Albert Ong on his mission to discover and test new treatments for autosomal dominant polycystic kidney disease (ADPKD). Professor Albert…
Read more

Grant to study genetics could improve lives of ARPKD patients

23 June 2022 | Jane Pugh | Latest news
We're thrilled to co-fund a PKD PhD Studentship under the supervision of Dr Joe Cockburn, one of three brand new awards funded by our groundbreaking research partnership with Kidney Research UK. …
Read more

PKD patients set to benefit from research investment of over £500,000

26 May 2022 | Jane Pugh | Latest news
PKD Charity and Kidney Research UK have teamed up to fund three research projects to improve the lives of PKD patients, with grants worth a total of £537,000. The awards mark the start of a new c…
Read more

Grant to study blood vessels and lymphatics in PKD

03 May 2022 | Jane Pugh | Latest news
The PKD Charity has awarded a £14,960 research grant to a group at University College London (UCL), who are looking to develop new treatments for polycystic kidney disease (PKD). Headed up by Pro…
Read more

Living Well on Haemodialysis

17 January 2022 | Jane Pugh | Latest news
Researchers at the University of Derby and the University of Nottingham are looking for people to take part in a trial of new online materials designed to help people live well on dialysis. The m…
Read more

PatientView to move to Patients Know Best

09 December 2021 | Jane Pugh | Latest news
The UK Kidney Association (UKKA) has signed an important deal with Patients Know Best (PKB) to re-platform the national patient-facing system PatientView to the PKB personal health records platform…
Read more

Grant to promote PKD treatment research

27 October 2021 | Tess Harris | Latest news
The PKD Charity has just awarded a £45,000 grant to the UCL Division of Medicine at the Royal Free Hospital London to part-fund a 3-year PhD Studentship. We urgently need new ways to treat polycy…
Read more

ADPKD aneurysm risk study

14 October 2021 | Tess Harris | Latest news
People with autosomal dominant polycystic kidney disease (ADPKD) are known to be at high risk of intracranial aneurysms (IA). IAs occur in about 3 in 100 of the general population but in between…
Read more

Defining progression of ADPKD and tolvaptan efficacy

13 May 2021 | Jane Pugh | Latest news
One of the problems when managing ADPKD patients is that there is a wide variation in how quickly the disease progresses. Even if we know the gene (PKD-1 or PKD-2) and type of mutation responsible, t…
Read more

PKD Charity and Healx collaborate to apply AI to the discovery of novel treatments for rare kidney diseases

26 February 2021 | Tess Harris | Latest news
Healx, the AI-powered, patient-inspired technology company accelerating the discovery and development of rare disease treatments at scale, today announced that it would be collaborating with the PKD…
Read more

Funding awarded to landmark research project studying chronic pain in ADPKD

13 May 2020 | Jane Pugh | Latest news
We’re delighted to announce a major award from the National Institute for Health Research (NIHR) - the nation's largest funder of health and care research - to study pain in Autosomal Dominant Polycy…
Read more

Are kidney cilia the key to understanding ADPKD?

03 January 2020 | Tess Harris | Latest news
The PKD Charity has awarded £10,000 to Newcastle University to analyse the cilia in kidney cells from ADPKD patients. What are cilia? Cilia are tiny antenna-like structures inside the kidney, wh…
Read more

PKD Charity wins National Lottery funding to support families affected by PKD

12 December 2019 | Tess Harris | Latest news
We have succeeded in securing funding from the National Lottery Community Fund for our PKD Positive Peers Programme - a 5-year programme of vital support activities to help patients and families to d…
Read more

Organ Donation Law in England is Changing

02 March 2019 | Tess Harris | Latest news
The Organ Donation (Deemed Consent) Bill passed its final stage in Parliament (26 February) The Bill is expected to become law in Spring 2020. From then, all adults over 18 in England will be consid…
Read more

ARPKD PhD 3-year research grant award

19 November 2018 | Tess Harris | Latest news
The PKD Charity, Arran Brown Rainbow Foundation and University of Wolverhampton are jointly funding a pioneering 3-year ARPKD research project at Wolverhampton and UCL London. What is ARPKD? ARP…
Read more

PKD Charity funds vital PKD databases

19 November 2018 | Tess Harris | Latest news
The PKD Charity has awarded £20,000 to UCL Centre for Nephrology Royal Free Hospital to fund a specialist research nurse to help develop the ADPKD and ARPKD RaDaR paediatric patient databases…
Read more

2,000th patient in 100,000 Genomes Project has ADPKD

30 May 2017 | Tess Harris | Latest news
ADPKD patient Christine Mather has become the 2,000th person in Greater Manchester to take part in the 100,000 Genomes Project, which is transforming the diagnosis and treatment of rare diseases…
Read more

Biliary tract disease linked to polycystic kidney disease

30 May 2017 | Tess Harris | Latest news
A group of researchers from Oxford Kidney Unit and the University of Oxford has produced the first analysis of whether there is a link between autosomal dominant polycystic kidney disease (ADPKD) and…
Read more

Moderate salt restriction is beneficial In ADPKD

21 June 2016 | Tess Harris | Latest news
Restricting salt in your diet can help slow the progression of ADPKD, according to a recent study. This is a lay summary of an article published in Kidney International, February 2017. What we…
Read more

Understanding pain in Autosomal Dominant Polycystic Kidney Disease (ADPKD)

21 June 2016 | Tess Harris | Latest news
This is a report of a survey carried out during the ADPKD Information & Support Day, Birmingham Hospital, 23rd January 2016.  The issues of pain were explored in a workshop during the day. We are…
Read more

Feedback

We welcome feedback on the information provided on this webpage. If you have any feedback regarding the information provided on this webpage, please complete the Feedback Form